Sacrifice and solidarity: a qualitative study of family experiences of death and bereavement in critical care settings during the pandemic

Abstract

BackgroundPandemic-related restrictions are expected to continue to shape end-of-life care and impact the experiences of dying hospitalised patients and their families.ObjectiveTo understand families’ experiences of loss and bereavement during and after the death of their loved one amidst the SARS-CoV-2 (COVID-19) pandemic.DesignQualitative descriptive study.SettingThree acute care units in a Canadian tertiary care hospital.ParticipantsFamily members of 28 hospitalised patients who died from March–July 2020.Main outcome measuresQualitative semistructured interviews conducted 6–16 months after patient death inquired about family experiences before and beyond the death of their loved one and garnered suggestions to improve end-of-life care.ResultsPandemic restrictions had consequences for families of dying hospitalised patients. Most family members described an attitude of acquiescence, some framing their experience as a sacrifice made for the public good. Families appreciated how clinicians engendered trust in the name of social solidarity while trying to mitigate the negative impact of family separation. However, fears about the patient’s experience of isolation and changes to postmortem rituals also created despair and contributed to long-lasting grief.ConclusionProfound loss and enduring grief were described by family members whose final connections to their loved one were constrained by pandemic circumstances. Families observed solidarity among clinical staff and experienced a sense of unity with staff, which alleviated some distress. Their suggestions to improve end-of-life care given pandemic restrictions included frequent, flexible communication, exceptions for family presence when safe, and targeted efforts to connect patients whose isolation is intensified by functional impairment or limited technological access.Trial registration numberNCT04602520; Results.

Psychological distress and morbidity of family members experiencing virtual visiting in intensive care during COVID-19: an observational cohort study

“…Furthermore, in the UK, while many ICUs conducted virtual visits for all patients, some only facilitated virtual visiting during end of life or acute deterioration, others only facilitated virtual visits in awake and stable patients [ 9 ]. Infrequent anger following a virtual visit may be reflective of an attitude of acquiescence also demonstrated in a Canadian study of family members bereaved during the pandemic [ 34 ].…”

Bereavement in the Time of COVID-19: Learning from Experiences of those Bereaved as a Result of Deaths in an Acute Hospital Setting in 2020

“…Studies examining bereavement during the pandemic have found that prolonged and complex grief is common ( Dennis et al, 2022 ; Torrens-Burton et al, 2022 ). Importantly, these reactions have been linked to particular experiences.…”

“…Importantly, these reactions have been linked to particular experiences. Twenty-eight interviews with family members conducted on average 9 months after bereavement due to COVID-19 death in intensive care units emphasised the importance of communication and visitation ( Dennis et al, 2022 ). The inability to visit the dying and restricted funeral and after death rituals has been associated with feelings of anger, guilt and lack of acceptance of death ( Torrens-Burton et al, 2022 ).…”

The Impact of the SARS-CoV-2 Pandemic on the Needs of Non-Infected Patients and Their Families in Palliative Care—Interviews with Those Concerned

“…Considering the significance of connectedness at the end of life [33], and the present additional stressors caused by the pandemic circumstances, the negative effects of constrained connections between patients and family caregivers must not be neglected. These include the increased burden and stress-related symptoms [34], decreased quality of communication with healthcare professionals [17], compromised dignity [35], and long-lasting grief [36]. For family caregivers, double-hit effects of the pandemic, due to the risk of contagion and risk of social isolation, have been reported [37].…”